I Want to Live

David and I were watching PBS NewsHour the evening of Nov. 1 and I happened to be out in the kitchen when David called: “You have to see this!” We save the news and he was replaying an interview that Judy Woodruff had just completed with Daniel Doctoroff. (See lead photo.) I’d never heard of Doctoroff, but upon looking up his bio it turns out that — among many other things — he got a law degree from the University of Chicago and for years worked with Michael Bloomberg as deputy mayor for economic development and the rebuilding of New York City. In December 2021, Doctoroff stepped back from his many roles when he developed symptoms of ALS (amyotrophic lateral sclerosis), a neurodegenerative disease that had also killed his father and uncle.

Let's move to the interview with Woodruff and why David called me to see it. I recorded this next part with my phone as Doctoroff said with somewhat halting speech:

I’m going to do everything I can to extend my life — even if going on a permanent ventilator, even if paralyzed and only able to communicate with my eyes. I will take that option ... because I want to live. I want to see my grandkids grow up. I think I can even contribute — even as I get sicker.

At that, he adds: “And squeeze every bit of life that you can. Totally. And do it day by day.”

Not only was this a very moving interview, it also brought to my mind a section in my last book, The Fiction of Our Lives: Creating Our Stories Over a Lifetime. In the last section of that book and, in fact, the last chapter about life and love, I describe an article that I ran across in The New York Times Magazine about the tragic event in Peggy Battins and her husband’s lives that tore their world apart. (Robin Henig, “A Life-Or-Death Situation”, The New York Times Magazine, July 13, 2013, pp. 27-33, 42, 50.) Peggy was a bioethicist who had always argued for the right of the terminally ill to choose assisted suicide. Her husband, Brooks, an academic and healthy, athletic man, became a quadriplegic after a bicycle accident.

In this incredibly affecting article that has stuck with me to this day, Brooks continually maintains that he would not want to live under such circumstances. He was completely bedridden and was lifted into some kind of chair with a sling placed under him. So the day came when the couple had planned for him to end his life, and Peggy was sitting beside him on the bed. But when it came time to do it, he couldn’t.

The article portrays not only their anguish but also the inability to let go of life and love for the other — as well as the overwhelmingly strong will to live on his part. At one point Brooks says memorably, “You can get used to anything.” As I said before, this writing about Peggy’s and Brook’s life together, its struggle, its love — and the desire to live no matter what — has stayed with me through the years.

I believe that the struggle to live and our embrace of the bonds of love are in our genes, as are a lot of other things I have explored in my writings that also feed our desire for violence and hate for the Other, and the complexity that makes up our human lives — both good and bad. And at some point, in terminal decline and intractable pain and suffering, withdrawal of life support remains an ethical option.

But until then I agree wholeheartedly with the writer Abraham Verghese as he reviews a book titled One Hundred Names for Love (see second photo below) — another story of the bonds of love overcoming the limits of harrowing disease. Verghese writes that “this book has renewed my faith in the redemptive power of love, the need to give and get it unstintingly, to hold nothing back, settle for nothing less, because when flesh and being and even life fall away, love endures.”

I believe that the struggle to live and the bonds of love are, in fact, stronger than death.

So shall it be.